Complex Regional Pain Syndrome

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In the time that I have been suffering with chronic pain I have always looked for ways to treat my pain in a more natural way. Things like warm wheat packs and Magnesium are in my go to treatments when I’m sore and uncomfortable. I never substitute natural over modern medicine, but I do believe in using natural alongside modern medication.

“4. Use nutrients and herbs on a daily basis to reduce pain and inflammation. including bromelain, fish oil, quercitin, curcumin, boswellia, licorice (use “DGL” if you have high blood pressure), devil’s claw, ginger, and Sam-E. There are many products on the market that include a combination of these ingredients. Ask in the supplement section of your local major natural foods store for help.”

I for one am a big fan of Curcumin and plan to share more about this chemical found in turmeric that is great for easing pain. It’s also a good excuse for eating Indian food. I’ll find any excuse really. LOL.

This article is well worth the read, I’m not a doctor, so of course it is best you chat with your Dr about anything you try. Even if you can take just one thing from this article then it’s worth the read.

Im sorry for being such a bad blogger, but having CRPS in my left hand and symptoms in the right I feel that I have a pretty good excuse for not wanting to be typing too much. I do think about it and sometimes I even start typing but the pain is too much and I have to stop.

The one thing I hate about the infusion cycle is when is stops working and the pain comes back. Lucky for me Ive only been struggling for the past week or two. Last time it was more like 6 weeks before the next round and it was hell. I only have a week until my next infusion and I cant wait. The thing about the Ketamine wearing off is that it shocks me at how much the disease progresses underneath the numbing effect of the infusions and then BAM it hits you hard. But Im still lucky because I get lowered pain in between infusions and each one is improving for me. I love my infusions and once the needle is in my vein Im happy. I really hate having the IV put in. Im fine with blood tests though. Go figure!

This time around Im hoping that the shocking fatigue will leave me and Ill be able to do more. It takes me days to get over anything eventful and Im finding it hard to do much at all at the moment. Even sitting up to get out of bed is hard for me at the moment.

I really cant wait for next week. Im going to Adelaide with my “adopted” parents, Steff and Phil. Plus my little Sis, Amity is staying with us for a few nights. I will have my infusions from Tuesday through to Thursday and they will be my “responsible person”. Then Thursday night we will head out to Gawler to stay with Amity, before heading home on Friday. Im also hoping that Ill get to see my darling bestie Casey while im in town. I really do have to make sure I take it easy though and rest up in the afternoons while Im having the infusions. They are my priority after all. lol.

I just cant wait to have the pain settle and I get to lay back and have a sleep. 🙂

I hope your all doing as well. Ill get back to posting after my infusions. xx

As you all know I love love love Magnesium and what it can do for our bodies. I have written before about making my own Magnesium oil and am currently experimenting with a few other ways to apply Magnesium to my skin. I personally believe dermally is simply the best way for us chronic pain sufferers to get it into us and hopefully directly settle the pain.

Until recently my main alternative to the oil was to have an Epsom Salt (Magnesium Sulphate) bath. It’s cheap, and effective. In a warm bath it helps sooth a flare but recently I was cut short of some salts when I really needed them. It was one of those flares where you can barely move a muscle without triggering a chain of excruciating spasms that shoot through your body. Walking’s out of the question and it became a full bodied nightmare and this time I had no salts to heal me.

To cut the story short, what I did have available was the Magnesium crystals (magnesium chloride) that I use to make my Magnesium Oil. What the heck, I was desperate to try anything, so in they went.

I hopped into the bath and soaked my poor hurting body for about an hour. The warm water always feels so good when I’m suffering and when I turn the jets on; I get a bonus massage as well. I normally only last an hour to hour and a half tops before I get bored. So when it came time to get out I couldn’t believe that my flare had settles almost entirely. I could walk; I was a functioning human being once again. Well, for a CRPS sufferer anyway. There was still pain but the sort I could handle these days.

Suddenly Epsom Baths seemed to lose their shine. I used to think they were magic and now they are what I have when I’m saving my Magnesium Crystals for a special/crappy occasion.

I’m finding that what I’m calling Magnesium Baths are able to calm my flares and able me to function again the majority of times I try them. This morning I woke up to an average flare. Aching joints, spasms, throbbing and shooting pain, the normal deal, I was just a ball of hurt. I was planning to drive to see a friend 40km away later in the day and this was an issue. I’m trying to get out more these days to keep myself mentally healthy. CRPS is such a soul crushing disease. I got up knowing it wasn’t a good sign. If I wake up with pain it means it will only get worse. An average day gives me up to an hour of low pain before it hits me in a mid range of pain. I decided to take action and have a good soak in some Magnesium and Wham Bam Thank You Mam…… I was human again….. Ok, I was CRPS human again!!!

I really do think that for me the Magnesium Baths are helping me calm my flares and turning them into something bearable. I don’t always choose to have them because we are on rain water here and it’s a big bath to fill. Summer can leave our water supply a little stressed. Some days I have to settle for smothering myself with Magnesium Oil and having a warm shower. (Sarcastic) Yayyyyyyy!!!!!!

I do sometimes laugh at how I call my low pain flares “functional”. The only other way I would describe someone’s issues with the word “functional” is if you describe someone as a “functional alcoholic”. Lol. It’s insane what we call “low pain” and a “good day” with CRPS.

But back to the Magnesium Baths, I do love that they are a drug free way of calming a flare. I find that the further into CRPS that I am getting, the more I feel that finding alternative treatments are important. My baths won’t kill off my kidneys, cause me to become a zombie, an addict, stop me driving or give any other nasty side effects it may on the other hand cause me to be a “functional magnesium user”

My bath normally consists of the following:

Water to above the spa jets and deep enough for me to lie in

1 cup Magnesium crystals (replacing the same in Epsom salts)

Essential Oils (I’m starting to play with new oils so watch this space) Lavender, Spearmint and Patchouli

A pot of green rose tea

Good music

A scented candle

Something to read

If you try Magnesium Baths for yourself, I would love to hear if they help. We are all different, but I do hope this helps other sufferers.

Hope your pain free today. xx

Can I also point out that I’m not a Doctor or any other practitioner. I am simply passing on to other sufferers what helps me cope with CRPS and what works for me may not work for you. It’s up to you to try for yourself and perhaps quiz your GP about it if you have concerns. I’m not responsible for how you use this information. I do hope you and others get something positive from this. It’s all about helping each other out.

I found this fantastic Pain Scale the other day and thought that I would share it with you all. I do not know where it originates from but it is too good not to share. I have in the past found it hard to find a good definition of each level of pain. For my own pain diaries that I have been asked to keep by my Doctors, I have merged many together and made do with what I had. I like that this one justifies what is minor, moderate and severe pain.

If anyone knows where this chart originates than please let me know. I like to give credit where credit is due. 🙂

I have to say that music has gotten me through some long and lonely nights. Some nights I have felt like my life is pointless and whats the pint in it all. Its funny when you see music in a new light. Overnight I was watching Rage on the ABC and the Guest Programmer put on R.E.M’s Everybody hurts and I really understood what they were saying. Im thinking when this happens Ill do a post like this and make it a part of my CRPS SOUNDTRACK posts. Ill try to not let it all be too serious.

“Everybody Hurts”
R.E.M

When your day is long
And the night, the night is yours alone
When you’re sure you’ve had enough
Of this life, well hang onDon’t let yourself go
‘Cause everybody cries
And everybody hurts sometimes

Sometimes everything is wrong
Now it’s time to sing along
When your day is night alone (Hold on, hold on)
If you feel like letting go (Hold on)
If you think you’ve had too much
Of this life, well hang on

Sorry I haven’t been posting very much. That’s the thing with CRPS in your hands, typing can really hurt. I’m looking at ways to sort that out. Smaller posts, software that types what I say etc. Mostly typing has’t been too difficult for me, (starting to hurt now) In fact I have found it to be great physio and part of how I reclaimed my hand. BUT… I have been taken off of my pain killers (Tramadol) and put back onto Endep (amitriptyline) so that it works along side my maxed out dose of Lyrica, 600mg/day. I was supposed to be on Endep anyway, but it and Tramadol have a tendency to cause you to have fits. I wasn’t too interested in that. To be honest, I was happy to get rid of the Tramadol because in a matter of 5 months it had made me high on 50mg when ever I needed, to not doing too much at all on 450mg/day.

I have started to see a new Gp and he agreed that the Tramadol was only giving me bad side effects and took me off of it. But here is the catch… I get nothing to replace it with because apparently, 30 is too young to be hooked on Opioids. It wasnt opioids that I wanted anyway. Its a solution to manage the pain that Im after. I will say that I was a little panicked about leaving with nothing for breakthrough pain. Especially as I have no desire to go to my local hospital if my pain got out of hand. They only gave paracetamol/codene for my burn injury. Im sure they will break out the good stuff for that pain that they cant see…. The next hospital is 100km away, so Ill be asking what to do when I go back this week.

So once the shock had worn off, I decided to give being free of Tramadol a go. Its been about 3 weeks now and the withdrawals are gone and I feel so much better within myself. It seems that the Tramadol was adding to my problems more than helping. Although they were helping more than I thought. But there is no going back now! and I have stumbled onto some reading on going without Opioids and I am seeing not taking them as possible. But then I’m typing this a 4am because I’m in so much pain that I cant sleep. This has been the norm since I got off of the Tramadol, and Endep isn’t helping with sleep the way it should because the pain is so bad. Im just coping with the pain but It cant go on like this.

Im off to Adelaide in just over a week to see the pain specialist and organise the next Ketamine Infusion. I cant wait really. 3 days of rest, sleep and no pain. Heaven!!! Plus Im seeing my new Neurologist and also my Physio. I plan to come home with some solutions to my pain. Once al of my appointments are over, Ill be going to spend a weekend at my friends place and attempt to do something for my B’day. Its my second attempt at a 30th birthday. Last year I was in bed and in hell.

Ok, I’m in a lot of pain now so gotta stop. Ill post more, I promise. Even if its short and sweet. 🙂

Id love to hear your thoughts on my situation or if you have experienced the same.

The other day I was tagged into a Facebook post of a news story called Australia faces silent epidemic of chronic pain that was shown on the current affairs show, 7.30, on the ABC (Aust). The story its self wasn’t exactly about CRPS but it may as well have been. It discussed the shortage of pain treatment in Australia and the long waiting list to access treatment. I once again was reminded of how lucky I was to get into treatment within three months. The story also went into the way we suffer and rely on addictive opioids to get by each day. I really related to this story and even felt a little emotional watching it. It was so good to see that we are getting some sort of coverage within the media for all sufferers of chronic pain.

And for those that cant watch it, here is the transcript of the story:

Australian Broadcasting Corporation

Broadcast: 18/07/2012

Reporter: Sarah Dingle

One in five of us will feel it and it costs some $34 billion each year, but how well equipped are we to face and treat chronic pain?

Transcript

LEIGH SALES, PRESENTER: Chronic pain is one of Australia’s most expensive health problems, costing our economy around $34 billion every year. Yet there’s only a handful of clinics that specialise in treating pain. It might surprise you to learn that these days, pain isn’t just considered a symptom, but a chronic disease in itself. Even so, most medical professionals still aren’t trained to deal with it. Today, the New South Wales Government committed $26 million towards developing new pain management services, but that will only meet a fraction of the need. Sarah Dingle reports.

SARAH DINGLE, REPORTER: It’s dinner time at the Quinzi house, but one member of the family hasn’t made it to the table.

ANTONELLA QUINZI, CHRONIC PAIN SUFFERER: When I get home, 6.30, quarter to 7, bath, I can’t even eat sometimes ’cause of the pain, and I wait for the medication to start working. Go to bed. I go to bed. That’s my solace.

SARAH DINGLE: It’s seven hours since Antonella Quinzi last took a heavy-duty painkiller and the strain is beginning to show.

ANTONELLA QUINZI: Right now I can tell you 100 per cent, I’m trying to hold it together, I’m in front of the camera, I don’t want to look like, you know… but yeah, it’s hard.

SARAH DINGLE: What kind of sensations?

ANTONELLA QUINZI: Well, numbness. Throbbing pain. You feel like the whole body is on fire. It takes your breath away.

SARAH DINGLE: Seven years ago, with her family complete, Antonella Quinzi had a hysterectomy. It was meant to be a routine procedure, to put an end to persistent gynaecological problems. But it left her with severed pelvic nerves and a shattered life.

ANTONELLA QUINZI: It got so bad two years ago that I didn’t want to live any more. And I know I shouldn’t say that. Because God gives you a life to enjoy to the fullest. And… you know, but we all get weak. There’s weak moments.

MICHAEL COUSINS, ROYAL NORTH SHORE HOSPITAL: Chronic pain is the most prevalent, most costly and largest health problem that at the moment is largely undiscovered and terribly undertreated.

SARAH DINGLE: At Sydney’s Royal North Shore Hospital, Professor Michael Cousins runs one of the few multi-disciplinary pain clinics in the country.

Patient Philip Lewington has chronic pain. Pain that persists long after the initial injury that caused it has healed. The former machine operator had his thumb crushed six years ago in a workplace accident.

SARAH DINGLE: Here patients are treated by a team of specialists. Including clinical psychologists to ease the enormous mental burden of ongoing pain.

PHILIP LEWINGTON: My life, family life is nowhere near what it was. Um… sex life, basically non-existent, because of medication and what not. So not good at all.

SARAH DINGLE: It may not seem like it, but Philip Lewington is one of the lucky ones. Many wait for years for this kind of treatment.

Victorian pain specialist Dr Michael Vagg is says it’s a national embarrassment that that Australia pays almost no attention to its epidemic of chronic pain.

MICHAEL VAGG, PAIN MANAGEMENT UNIT, GEELONG HOSPITAL: One in five Australians will develop chronic pain at some point in their life, and only one in 20 of those people will have it adequately addressed.

ANTONELLA QUINZI: You live your life around the tablet.

SARAH DINGLE: Like many sufferers of chronic pain, Antonella Quinzi went to her family GP, who prescribed the opioid painkiller oxycontin. Now she’s an addict.

ANTONELLA QUINZI: The first year of taking the oxycontin I went from five milligrams to 10, 15 and 20, then I went up to 30.

SARAH DINGLE: Without the medication, the pain is overwhelming. She gets rashes and starts to shake.

ANTONELLA QUINZI: And that’s the reason why I’ve had to do little sneakies and take extra oxycontin at work. When you’re desperate, you will do anything to get rid of that anguish and pain.

MICHAEL VAGG: Many GPs feel compelled to provide strong painkillers, even though the best evidence would suggest in many cases they’re not improving people’s quality of life in the long term.

SARAH DINGLE: Pain specialists say chronic pain is caused by damaged nerves, sending electronic signals to the brain, and it could be that drugs are not the answer. Instead, surgeons are working with technology, inserting electronic stimulators next to the spine to block the pain signals. Now Australian researchers are about to take this much further, in a world-first.

MICHAEL COUSINS: There’s the tip of the needle. So that’s still going in the mid-line. That’s really good.

SARAH DINGLE: Professor Cousins carefully inches the electronic stimulator close to the spine.

MICHAEL COUSINS: Still wants to go a bit to the left. It’s OK to go a little to the left but not too much. All right, we’re ready to do a trial stim now.

SARAH DINGLE: For the first time, the surgeon can see live nerve responses recorded as he operates. And move the stimulator so it best blocks the pain signal.

MICHAEL COUSINS: The electrode is just to the left side of the midline. And half a millimetre of difference in position will produce a different area of stimulation. So we’re waiting now to see what the patient actually feels.

NURSE: Is that tingling?

PATIENT: Yes.

NURSE: And is that in your left side?

PATIENT: Yes.

NURSE: Is it in your left back?

PATIENT: No.

NURSE: Buttock?

PATIENT: Um… no. It’s, like, down the whole leg.

MICHAEL COUSINS: We might bring that down just a touch then.

NURSE: Yep. Electrons 2, 3, four when you’ve got ankle, all of them there, just to the middle of the buttock.

MICHAEL COUSINS: We managed to get electrodes placed in just the right spot. She started to feel some pain relief. It will take a couple of days to get that fully operational.

SARAH DINGLE: For now, Antonella Quinzi’s only source of pain relief is medication. But she clings to that same hope for a cure.

ANTONELLA QUINZI: Pray for healing. I pray for healing. I pray that I will wake up one morning and… not have this.